Patient- and Family-Centered Care in the Emergency Department for Children With Autism.


Journal

Pediatrics
ISSN: 1098-4275
Titre abrégé: Pediatrics
Pays: United States
ID NLM: 0376422

Informations de publication

Date de publication:
04 2020
Historique:
accepted: 27 01 2020
entrez: 3 4 2020
pubmed: 3 4 2020
medline: 17 7 2020
Statut: ppublish

Résumé

Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD. Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components. Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care. Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.

Sections du résumé

BACKGROUND
Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD.
METHODS
Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components.
RESULTS
Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care.
CONCLUSIONS
Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.

Identifiants

pubmed: 32238535
pii: peds.2019-1895L
doi: 10.1542/peds.2019-1895L
doi:

Types de publication

Journal Article Research Support, U.S. Gov't, P.H.S.

Langues

eng

Sous-ensembles de citation

IM

Pagination

S93-S98

Commentaires et corrections

Type : CommentIn

Informations de copyright

Copyright © 2020 by the American Academy of Pediatrics.

Déclaration de conflit d'intérêts

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

Auteurs

David B Nicholas (DB)

Faculty of Social Work, Central and Northern Alberta Region, University of Calgary, Edmonton, Alberta, Canada; nicholas@ucalgary.ca.

Barbara Muskat (B)

Integrated Services for Autism and Neurodevelopmental Disorders, Toronto, Ontario, Canada.

Lonnie Zwaigenbaum (L)

Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.

Andrea Greenblatt (A)

Department of Social Work, Hospital for Sick Children, Toronto, Ontario, Canada; and.

Savithiri Ratnapalan (S)

Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.

Christopher Kilmer (C)

Faculty of Social Work, Central and Northern Alberta Region, University of Calgary, Edmonton, Alberta, Canada.

William Craig (W)

Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.

Wendy Roberts (W)

Integrated Services for Autism and Neurodevelopmental Disorders, Toronto, Ontario, Canada.

Justine Cohen-Silver (J)

Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.

Amanda Newton (A)

Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.

Raphael Sharon (R)

Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.

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